Abstract: Suffering syndrome a new pathological entity in end-stage dementia.

The 10th International Conference on Alzheimer’s Disease and Related Disorders, Madrid, Alzheimer’s & Dementia July 2006, Volume 2, Issue 3, Suppl 1, p. S258-259.

Suffering Syndrome a New Pathological Entity in End-Stage Dementia

B.Z. Aminoff, MD, PhD

Geriatric Division, The Chaim Sheba Medical Center, Tel Hashomer, and Human Suffering and Satisfaction Research Center, El-Ad,;Israel.

Background: Patient suffering is a pathological syndrome traditionally viewed as a state encompassing psychological distress, spiritual concerns and various aspects of physical pain. There is insufficient clinical evidence of suffering in dying dementia patients and key criteria for irreversible medical conditions that may lead to inappropriate evaluation and insufficient palliative treatment.

Objective: To evaluate the suffering of terminal dementia patients (MMSE = 0/30, FIM = 18/126) using the scale over time, from admission to a geriatric ward and during a 6 months follow-up period.

Patients and methods: A prospective study of consecutive end-stage dementia (ESD) patients admitted to a general geriatric department of a tertiary hospital. Patients were evaluated weekly by the MSSE that was developed by us and presented at world and regional congresses in Berlin (1999), Jerusalem (2000), Vancouver (2001), Stockholm (2002), Tokyo (2003), Las Vegas (2004), Rio de Janeiro (2005), the Committee for Labor, Social Services and Health of the Israeli Knesset (Parliament) (2005).

Results: Two hundred patients were studied. After 6 months follow-up of ESD patients who admitted to a geriatric department, 88 (44%) had survived and 112 (56%) had died.
The MSSE scale score of the surviving ESD patients was low. The total score on the day of admission was MSSE = 3.41±2.02, and decreased to MSSE = 2.77±1.90, (P = 0.003) during 6 months follow-up. Conversely, the MSSE scale score of the ESD patients who died was high – the total score was MSSE = 4.97±2.46 on the day of admission to a geriatric department, and increased to MSSE = 5.93±2.39 on the last day of life with a significant difference (P≤0.0001).

Conclusion: Suffering syndrome in terminal dementia is the new proposal pathological symptomatology and entity that is characterized by a high MSSE scale score, <6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise. Suffering syndrome may be the key criterion for enrolling ESD patients for palliative and hospice treatment, and for the development of new alternative setting approaches, such as “Suffering Relief Units” for end-stage and dying dementia patients.